Update long due...

Wowza it’s been a long time since I updated this blog. I’m not even sure where to begin. I guess the obvious place to start would be with the medicine since that was/is the purpose of the blog in the first place. Elijah had his cardio workup last Monday. He had all the usual procedures- Echo, Xray, pulse-ox, Doctor visit, etc. He hated every single second of his time at UCLA. He his now at the age where he recognizes things and remembers procedures and he wasn’t feeling it. If you came near him, he screamed. If you smiled in his direction, he let you have it. Poor kid.

Overall, the news was positive. His oxygen level is still good in that it is ranging from the low to mid 80’s, his diaphragm is down (instead of being sucked up into his chest as it was in the past), and his heart function looked more or less the same (depressed but stable).  The echo was pretty much the same as it had been in the past with a little regurgitation and some narrowing.  The most amazing news was that Elijah now weighs 21lbs 4ounces and is in the 6^th percentile. This was surprising in that Elijah just had a major stomach bug (which landed us at CHLA’s emergency room) and I was sure he had lost a ton of weight.  I can’t tell you how excited I was to hear that he had gained weight. Talk about happy dance time! It was all I could do not to break out dancing right then and there. I’m not entirely sure Dr. Sklansky would know what to do with me had I broken out the moves. 

Dr. Sklansky thinks that we will have another appointment in March and if all goes well, we will have another cath in June. This cath would be in preparation for the Fontan. The doctor thinks that the Fontan will take place in August. Ugh. I was hoping for another year before facing another open-heart surgery. Because all of Elijah’s procedures have been early and he hasn’t been the most simple case, Dr. Sklansky believes we will need to have an early Fontan.  However, all of this really depends on Elijah. He needs to gain weight. If his sats stay high enough, we may be able to postpone the Fontan a big longer. Yet again, we prepare for the worst but hope for the best.

In other news, Noah turned 4!!! I can’t believe my little baby is already a little boy. There are times when I look at him that I can’t help but remember the days when he used to curl up on my chest and sleep. I love that boy. He is so full of life and headstrong and I can’t wait to see what he will become.

Of course in all this news, we can’t forget about Christmas. Family has been in and out of our house since the middle of December. I think Noah may get a little depressed when the last of the family leaves. He has truly enjoyed having everyone come and sleep at our house. This is the first year that Noah truly understood and was able to appreciate the holiday and man oh man did he. He was in charge of the lights on the house and the lights on the tree. He and Elijah, along with my mom, made a gingerbread house and mouse cookies. My sister and I tried to make my grandma’s cookies. Although not a complete failure, it was also not a success. Some of the recipes turned out while others were inedible.  However, it was the experience that counted. It was the joy of being in the kitchen with my sister and remembering our grandma.

I need to give a shout out to my girl Jen. After totally mocking her when she told me she had tickets to a Beyonce concert, she invited me to join her. Although I don’t know any of Beyonce’s songs, it was a great night! I always love spending time with my BFF and add to that a great show experience and you have a wonderful night.  I really struggle with feeling guilty when I take time to myself, especially at night and especially now with this new job that demands some later nights.  However, it’s times like these that feed my soul.

Truly Inspirational. Meghan Roswick - HLHS

Neurodevelopmental Evaluation

When Elijah was born, actually before he was born, we were asked to participate in several studies. They really have little answers when it comes to HLHS, and they are working hard to get some. We agreed to the studies that did not require any invasive procedures for Elijah. One of those studies involved a study team following Elijah's neurological development. I had an MRI before he was born, he had another MRI after the Norwood, and about a month ago he went in for an evaluation.  They used something called a Battelle Developmental Inventory, Second Edition which involved a parent interview, structured activities with Elijah, and observation of Elijah.  The test assesses adaptive, personal-social, communication, motor, and cognitive skills.

Overall, Elijah did very well. He placed in the average range for everything. Areas of strength for Elijah were in self-concept and social skills and attention and memory skills. Possible areas of weakness were indicated in gross and fine motor skills and receptive language. All in all, Elijah is doing very well. He started walking a bit late and that was to be expected. He is a rock star. They will follow up with him in a year to do another assessment. The great thing is that they not only will give you the results of the testing, but they will also help you connect with agencies in the event that you need assistance.

There are so, so many variable when it comes to Elijah. It was a relief to know that this, at least for now, was not one of them. 

A bit of sadness along with holiday joy...

I don’t know if it’s the time of year, the upcoming holidays, or just the passage of time, but I have been thinking about my grandma a great deal lately. I miss her.  I talked to my sister the other day and she said she was feeling the same way. We reminisced and shared memories.  With the holidays on the horizon, it is hard not to think about my grandma. She used to make dresses and sweaters for the orphanage and she was the best baker around. One of my most prominent memories of my grandma are her cookies. She would start making cookies months before the holidays. They were amazing. She was amazing. It felt good to talk about her with Lyndsay, but it was also sad.

In retrospect, it may not have anything to do with the holidays. As time goes by and the boys get older, I can’t help but wish my grandma was here to watch them grow. I think that she would laugh at Noah’s antics and smile at Elijah’s enthusiasm for life. She would love Noah’s energy and the two of them would play and she would teach him how to cook. Elijah would be the one who would want to settle in her lap and cuddle. Elijah would be the one to sit and watch Jeopardy with her. I can see her now, holding him tight, saying soft prayers. These are the things I think about. The things that will never happen and it makes my heart hurt. 

It may be the holidays, or just the length of time between visits, but I have a strong desire to return home. To return to my roots. It has been a long time since I have felt that urge. I haven’t lived in Alaska in almost 14 years and yet it is still home to me. I have gone back before, but it was more for the fun of it, for the adventure of taking my family to Alaska and visiting with my dad and his wife. This time I feel like there is something pulling me there.  I’m not sure why I feel this way. I think a part of me needs the peace and absolute quiet that comes with wide-open spaces. There is a serenity in the landscape that calms me. I haven’t found that here. Although I do enjoy living in California, the pace can become tiresome. I need a moment to pause. The past year and a half has been filled with such highs and such lows that I think I am yearning for a moment of solitude to re-center myself.

In the end, I think it is all connected. My grandma was my family’s cornerstone. She grounded our family and was our constant. We may move, things may change, but she would always be there. I am looking for that place to feel grounded. I always felt grounded with her. I think she did that for many people. She spoke her truth and loved unconditionally. I miss her. I miss home.

Fall Fun

The boys really enjoyed Halloween this year. This was the first year that Elijah got to really participate in the festivities. They carved pumpkins, went to the pumpkin patch, and went trick-or-treating twice! Elijah is hilarious in that he wants to be just like his big brother. He follows Noah around and gets so angry when he can't do something Noah does. As each day goes by, we see a little more of Elijah's unique personality. He is an amazing little boy who is truly enjoying life. Together these boys can tear our house apart in 1.2 seconds. But man do I love them!

The Non-Update Update

I think these updates are my favorite. Over the last year I have spent so much time buried in doctors, nurses, and procedures, that this blog became about explaining diagnosis and interventions. I am proud to say that as of today, knock on wood, I don't have any of that for you. Elijah is doing well. Like really, really well. According to the scale at home, he has FINALLY crossed the 20lb mark. His pediatrician said that he was actually on the growth chart (2nd percentile but who cares about those details). They actually had to increase the dosage on his medication because he gained weight. I don't think they have done that in a year.

Elijah started preschool about a month ago. I was panicked about the whole idea of preschool for my little guy. When Noah started school I worried. This was different. This was full blown freaking out. He was so anxious around new people that I feared he would be afraid all day long. That he would cry. That he would look for me and I wouldn't be there. Oh man, my heart was so heavy. I felt like by working, I was letting my little boy down. I felt like, because of his special heart,  I should be able to stay home with him. But those are not the cards we were dealt and let's be real, I am a working mom. I am best as a working mom. Staying home with him would do nothing for either of us except relieve my guilt. So to school he went. And you know what? He did awesome. He was amazing. Can you believe that he did not cry? When he didn't cry the first day I thought it was a fluke and that the tears would start on day two. Then day two became day three and three turned into four. It has been a month. We have had a few tears along the way and a few moments of "you can't possibly be leaving me here again." But overall, this kid is flourishing. His language is exploding. He understands what you are saying and can follow multi-step directions. He is doing awesome.

Where I struggle is finding peace with him being okay. I feel myself always holding my breath. I'm always waiting for the other shoe to drop. I'm constantly watching his coloring and checking on his lip color (purple=bad). I'm monitoring his breathing and evaluating his effort. I need to relax. I feel like I am on borrowed time and I want that time to last as long as possible. I need to find peace in where he is now. I need to allow myself to stay in this moment.  Instead of borrowing worries by looking into the future, I need to enjoy this moment fully and completely.  So that is my goal. My mission. To sit in peace with where he is now. I will plan for the future but live in the present.

Doctor's Appointments

I've talked about it before. The incredibly long, incredibly intense days that are Elijah's cardio appointments.  It wasn't until I was talking to one of my closest friends that I realized what makes those days so intense. It isn't the time. Six hours really, in the long scheme of things, isn't that long. It's what exists in those six hours that makes it so exhausting. It's the worry, the anxiety, the anticipation of something going wrong that sucks the energy right out of you.

It starts with an xray. You finally get to UCLA, after battling traffic, and get your car parked (mind you it costs $11 freaking dollars to park). You make your way up the elevator and go to radiology. The nurses there recognize Elijah and are excited to see him. You enter the waiting room and wait to be called back. It doesn't take that long until they come for you. You take Elijah back and sit him on the seat and get your apron and his blanket. You try your best to hold him still, but he is not happy about any of this. They take their pictures and you are grateful that they work quickly. Once you are done with radiology, you have time to kill. So you make your way to the cafeteria and grab a snack and try to keep Elijah entertained all the while wondering if the xray showed fluid on the lungs, or if his diaphragm looks any better, or if a coil came loose.

As time gets closer, you head to the echo. Again, you wait in the waiting room to be called back. Once they come to get you, you realize that this is going to be rough. Really, really rough. You wonder if you brought enough snacks to get through the next hour. Is he going to rest peacefully? Is he going to cry hysterically? How bad will it be this time? You get to the room and begin to take his shirt off. He cries. You lay him on the table and lay next to him. You try your best to sooth him and comfort him. You realize that he isn't hurting, just angry and scared. Your heart breaks a little. You give him suckers and make shooshing noises. You sing to him. You stroke his hair. Until finally, almost an hour later,  the tech is done. You wonder what the tech found. Is his arch narrowing? Has the function deteriorated? Fear starts to settle in.

You clean him up and head to the next floor to wait for the doctor. The wait in the general waiting room is not bad. They bring you back and begin to take his vitals. He cries through the weight check and absolutely hates the blood pressure monitor. He has to hold still in order to get a good reading and that is an impossible task. The machine has to repeat the squeezing over and over and over before it gets a number. And that number isn't good. So we repeat the process. Again and again and until the number gets close to what the nurse expects. The nurse hooks him up to the pulse ox machine and waits. The number fluctuates between abnormal and absurd until the nurse asks if the number it settles on is "normal". Maybe it is, maybe it isn't. We move on to the EKG, not an incredibly invasive test, but uncomfortable non the less.

They begin their work quickly, attaching probes to his upper body. Attached to each probe is a thick, heavy wire. There are about 15 of them in total. He has to stay still for a few seconds in order for  the probes to do their work. You try your best to distract him from the fact that each of the probes is pulling heavily on his sensitive little skin.  The nurse waits for the machine to signal that the test is done and then she very quickly detaches the probes from the wires. But she leaves the probes for you to pull off of his skin. You wait until she leaves to start taking them off because you realize that she doesn't want to hear the crying. You try to do this quickly. You watch the skin as it pulls away from the probe and the cries begin. You tell him you are sorry and that you will try to move as fast as you can. You pull each probe off and they leave behind little red marks all over his upper body. You think about that adhesive remover you have at home and know that you will need that when you get home because his chest is covered in sticky goo. That, along with the left over gel from the echo, and you know that a nice, long bath will be in order tonight.

After you get them all off, you start the job of entertaining him. He runs all over. He plays with the nurses, the door, anything that keeps him busy. Because this is when the real waiting begins. Although you have been given a room, you know from experience that you are long from seeing the doctor. That in fact the doctor probably has three people ahead of you all waiting for the him to read their echos, look at their xrays, and examine their child. Not to mention that the doctor needs to take all the information he has accumulated that day and create a plan. He is a great doctor, unlike any you have come across, and you realize that he is worth the wait, but that doesn't make the wait any easier. You wait... and wait... and worry... and worry... and think of worst case scenarios and picture how the bad news will sound. You go all the way back to when the diagnosis was given. That moment in time that you will never forget. And you look at him now, so vivacious and energetic. So normal. And you remember that this time is a gift.

After at least an hour, if not almost two, of waiting the doctor comes in. He is so incredibly kind and you remember why you come to this place. He explains things in detail and asks you for your thoughts. He makes sure you are comfortable with everything and he sits with you. And sits with you. Until he is confident that everything has been covered and that everyone, including you, is okay with what was discussed. And you may not be okay, and that is okay. You understand.

You may need to visit the pharmacy after this is done or you may not. You pay for parking and head to the car. You load up a very, very tired baby and start the trek home. You started this during the lunch hour, and are now heading home in the thick of rush hour traffic. You have at least an hour, but most likely an hour and a half drive home. You are exhausted. Mentally, physically, and emotionally done.

Dion experiences most of these days. I am so grateful to have married a man who, no matter what, loves his children and will do whatever is needed. Elijah's last doctor's appointment went well. He now weighs almost 20lbs and may even be on the growth chart. We think Elijah will have his next cath during the summer and his Fontan, open heart surgery, in the fall. I try really hard not to think about that.